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Celebrating the small wins

posted Jul 7, 2013, 1:11 PM by Melissa Burke
So I think I have now come to realize that life in the NICU isn't really about major breakthroughs. Instead it's about recognizing and celebrating the small wins that over the course of the weeks add up to some measurable progress. James keeps telling me to look at Peter's progress week by week instead of day by day, and if we reorient to that lens, I think we can claim some good positive momentum which is really reassuring. Looking back on the last week, I have recorded all "good days" when it comes to his respiratory issues. He is still having the occasional Brady (heart rate dip) and oxygen dips, but increasingly he can rectify them on his own which is what we all like to see (instead of the nurse having to intervene).
Fourth of July (his technical due date) was a little eventful because he had to have a blood transfusion as he was getting pretty anemic and it was lowering his oxygen carrying capacity (a complication he didn't need given everything else). He is still continuing on stomach feeds, 2 hours on, 2 hours off. He seems to tolerate them well, and particularly in the off periods he almost sounds quiet, a welcome change from a week or so ago when you could hear him wheezing from across the room. This has us thinking that he is increasingly handling his secretions and possibly even swallowing some of them (the verdict is still out on that but since we can't suction them out and he's not drooling them out, they have to be going somewhere)!! We are seeing more mouth action and I managed to get several visible sucks out of him on Fri. So all in all, feels like some good progress and he is continuing to show us signs that these functions are going to come back...perhaps just in due time.
This coming week we are planning to continue to test his feeds, moving to 1 hour on, 3 off. Hopefully that will help us make the call about the potential surgeries he might need. Also, he has an EEG slated for Mon so they can look at his brain activity and compare it to the one they did at day 2 of life - praying they see good things there.
Otherwise, we spent this weekend getting to know our sweet Peter more while also managing some quality time with J&T. Seeing them touch his hands and say, "Mommy my hands are so big compared to Peeder's!" brought tears to my eyes. It feels like yesterday when they were that small, but I know they are now ready to be great big brothers. We are all anxious to bring P home so they can start doing just that.
Peter's first swaddle bath - he absolutely loved it!!
I'm going to have to do this at home
Wait, do I know you??
J&T get to see the Duke helicopter yesterday -
a definite hightlight of the trip
Up close & personal with the helicopter - they got to go inside!